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For the Delaware State HIE, Turning Clinical Specimens from Discards into Medical Research

March 29, 2016
by Rajiv Leventhal
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Last fall, the Delaware Health Information Network (DHIN) announced a collaboration with the Lexington, Mass.-based biospecimen collection company iSpecimen, with the goal to allow hospitals and labs in the DHIN network to repurpose remnant clinical specimens into medical research programs.  According to both organizations, the specimens involved are samples that would otherwise be discarded once patient testing is complete. The organizations also announced Maryland-based Union Hospital as the first DHIN member to participate in the joint program.

Indeed, through this program, healthcare information from participating DHIN members is de-identified and matched to corresponding remnant specimens at their provider sites. The specimens and their data are then searchable in real-time using iSpecimen's technology. When matches are made, iSpecimen's technology instructs laboratory personnel at participating provider sites to pick and ship the specimens to iSpecimen's research customers instead of discarding them as they usually do once clinical testing is complete, explains Jan Lee, M.D., CEO of DHIN.

Lee notes that the iSpecimen initiative began at Brigham and Women's Hospital in Boston, as its hospital leaders were looking for ways to further their own research. They then realized that they had specimens that are being collected for clinical purposes right in front of them that will get thrown away as soon as tests have been run. What’s more, they realized that some of those specimens probably meet the requirements of their research work, Lee says. “So rather than go out and pay a specimen bank to order specimens that fit certain conditions, it makes sense to first check to see if you have any in your own hospital that are about to get thrown away. That’s where it all got started, and they used the information that was in their own hospital electronic health record (EHR) system to identify the specimens that would be of research interest,” Lee says.

Lee further explains the process: “Let’s say you’re looking for a specimen of female diabetics over the age of 50 with a hemoglobin A1C (HbA1c), for example. What you would want to be able to do is query your data sources and see if you have any specimens sitting around in your lab that meet those conditions. And then if the answer is yes, go snag that one, and the researcher doesn’t need any of the PHI [protected health information]—just that this is a specimen from a female diabetic over the age of 50 with an HbA1c over 9. So [the specimen] is de-identified before being provided to the researcher, and it’s a way of turning trash to something that has potential to further medical research.”

Jan Lee, M.D.

The idea, Lee, continues, is to be looking for earlier and more accurate diagnoses, or treatment modalities for conditions of interest. With genomics becoming a hotter topic all the time, and the whole idea of personalized medicine, the more you can identify what specific personal traits are correlated with successful treatment with this agent versus that agent, the better you’ll be, Lee says. “Right now you can say that 75 percent of patients have a good outcome with XYZ, but what about the 25 percent of those who don’t? What’s different about them? You can either shrug your shoulders and say life is random, or you can dig in to try to understand what is different about those 25 percent of patients that don’t see the benefit. What would give them the benefit? If not this, then what? The availability of a larger pool of specimens that meet very particular defined characteristics will accelerate the ability to tease out the ones that aren’t in the middle of the bell curve,” she says.

Indeed, iSpecimen executives began to see the applicable benefits for other hospitals and lab settings, in addition to Brigham and Women's. Since that initiative, it has set up as a commercial company and has been offering this service to other hospitals, Lee notes. “They approached us,” Lee recalls. “As the Delaware state HIE [health information exchange], they realized that we have data that goes beyond any one hospital. And you need the data to identify the specimens that you are interested in out of the state HIE. We have data from every hospital and every commercial lab in Delaware. If they used our data source to identify the specimens of interest, they will get a higher hit rate. So that was why they approached DHIN,” she says.

From DHIN’s side, Lee says that the organization was very excited about the collaboration because its senior leaders believe that there is value beyond point of care decision making in the aggregation of all the clinical data. “Clearly, the first and most critical primary use of the aggregated data is to support point-of-care decision making, creating that longitudinal health record that spans geographies, time and place, and aggregates data about a patient so you don’t have to go on a treasure hunt every time you need to know things that have happened in the past in order to make good decisions for a patient,” Lee says. “That’s always been our primary mission and purpose,” she adds.

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